May 15, 2017 Carried out on its ebb are a lifetime of skills and functions. There is no more walking down steps without hand rails. (I will become a supporter of the ADA) No more rushing. No more butterfly swim stroke. (A useless bit of hubris, anyway). Thankfully, no more dancing. No keys in the front left pocket. (It would awkward to ask a stranger for an assist.) No more walking in a straight line. (And that also means no more going out for cocktails.) Gracefulness? There was not much to begin with. But grace? Yes, to the assimilation of grace. The outgoing tide might take away but the incoming tide can still deliver.
And then you try to figure out the other leg.
June 15, 2017 In goes the right. Up rises the left, but wait! The left arm involuntarily lifts the pants higher. The leg has reached its limit. Try sitting. My back hurts, my hips hurt. I can’t lean forward enough. One leg in. One leg out.
The leg has startling drops. The brain orders up a stride, I get a step. Seeking a step, I get a stutter. Instead of gliding over roots, sidewalk cracks, and drain covers the foot catches and sends me flying. I think I tripped over a shadow. The big toe is said to establish balance and agility. But the toe is connected to the foot that is connected to the leg that is connected to the damaged nerves. Balance, agility, strength and control washed out on the tide.
My canoe bobs in a foot of sun streaked water, parting a pasture of water lilies. A school of tiny Perch mill about with expectation. What is the boarding strategy? Strong leg first into the boat, weak leg as stabilizer? Then push with the boarding leg and swing the trailing leg up and over? Not going to happen. One leg in. One leg out. Fuck! Both legs out. The Perch disperse on splash-down.
Imagine writing code to automate dressing. Perhaps there a thousand lines to command your foot into the open waist band, while make micro adjustments, jiggling the clothing with your hand, balancing on your other leg, bending your trunk upward, pulling and adjusting, (now with both hands) A thousand lines of code, with a couple lines awry. It is just broken code. With no developer to install a patch.
Perhaps a kilt.
My hands were tools. They opened jars that couldn’t be opened. They constructed and tore apart. They created fine works and scrawling wrecks. They fixed cars. Carved dovetails. Caressed babies. They raised barns and laid pipe. They guided J-strokes and brush strokes. They opened gifts, wrapped gifts, and crafted gifts. They have been frost bit, snake bit, and spider bit. And they were also a team, harmonious and fluid. Strong like a black smith, savvy like a surgeon. And now the left hand is done. It is Simon without Garfunkel, different possibilities but lost music. And no reunion tour.
There is a moment called “go/no-go”. Fifteen minutes from home, in a cold pouring rain, I analyze the incoming weather data: 60% chance of rain Wednesday (tomorrow) with a high of 60. We could choose to view this forecast pessimistically and wait another day. Or we could ignore how wet clothing and gear feels with a high temperature of 60. We opted for wet, cold, and wind.
This journey requires a level of effort that verges on suffering. But it doesn’t require suffering that seeps into foolishness. After a jittery night of cold rain, followed by a dour forecast, options are reviewed. And it is Vermont, the land of options.
This journey started in Vermont because it is as much state of mind as state of place. There is a reassuring continuity. I am always struck by the unchanging village centers and the impossible pastoral green. Disheveled farm buildings represent a timeless utility. Even the cows speak to stubborn allegiances. Holstein or Guernsey? (The fancy breeds like Belted Herefords speak of newcomers. The easygoing tension between the locals and natives is also part of the allure) And the names are local. It is hard to find a Target, an Olive Garden, a CVS. Each village has a general store. You buy gas at a place where they will fix your car. The cafes are small, usually announced by signage in need of some paint. Still damp and chilled, we found such a place In Wardsboro. Breakfast was fine, pancakes loaded with wild berries and a pint of Vt. maple. While getting to know the owner and other diners, we fork-feed our leftovers to a strapping Chocolate Lab. Definitely a Vermont scene.
We set our new course for the Northeast Kingdom. If Vermont is a state of mind, the kingdom is a place of myth. It is also home to the Kingdom Trails. This is a mountain bike destination where over fifty land-owners found some common ground and opened their land to an extraordinary set of trail builders. The result is called “flow” by the cognoscenti. I called it “too easy,” until I first rode it. The rocks, roots, ledgy drops, and bog tracts of NH are absent. You just ride, swoop, climb, laugh. I get it, you flow. It is a dance with the land.
The village of East Burke is built on Mountain Biking. Like a tribe, we gather, feeding a well-adapted economy. And the locals are focused and organized. They support the businesses of others and plan continually to expand the offering. There is a sense of welcome, you are part of a shared experience. On our trip north, we managed to gather some cellular signal and called ahead for lodging at the…. It was the off-season and we were the only guests. We settled in on the front patio, staring off to Burke Mt. Instead of dinner out we snacked on lunch leftovers from the Warren General Store and sipped Heady Toppers. The Inn Manager let us know that she was going home, telling us to “just text if you need anything”. This magnificent place was all ours. No concerns, no worries. Yeah, this is Vermont. And I certainly have no regrets. But I do have to hit some single track in the morning. It has been a while.
“It’s just like riding a bike” – There lives a concept that something ingrained in our neuro system becomes impossible to forget. This idea is buttressed by human biology. A physical act, done repeatedly, encourages a thickening of the Maylene Sheath surrounding our nerves. The act becomes repeatable without conscious thought. Motor Neuron disease is an auto-immune condition where the Maylene Sheath is under attack. The disease works against strength-building and skill retention. The nerve and muscle enter an uneasy stand-off. I imagine a bad relationship. Messages sent with collaborative intent, but gone horribly awry.
With uncertainty, I throw my leg over my bike and I’m eight again. It is the same make or break moment, unsure whether I’m heading down the lane or down to earth. Once underway, there is the intramural battle between the right leg, doing most of the work, and the left leg along for the ride. It is like a kid’s squabble: “Hey you’re not doing any of the work”; “Yeah, you’re lucky I’m even here…” But riding is still a relative strength. Guile offsets weakness, a bit of grit faces down instability, a lifetime of stored memory keep the pedals turning.
Out on the trail the brain sends messages in reaction to every ledge, root, hanging limb, too-narrow bridge, and sharp rise. The messaging takes an erratic course. To accommodate, I slow down. This leads to loss of stability and crashes. The concept of flow disappears. Speeding up means loss of control. And more crashes. I’ve always found the Black Diamond ratings to be inflated. Now I find them scary. I consult the map and choose easier trails. And I am flowing. It might be like the maple syrup on yesterday’s pancake. But fuck it, I am laughing my ass off up in the Kingdom, rolling single-track. Bruised, but no regrets. June 6, 017
…making the “thing” larger and slightly more hazardous than it really is
March 7, 2017 The doing of the thing and the preparing for the thing live on the same scale of gratification. Any adventure, no matter how small, suggests a sense of conquest. And at the bottom end of the conquest scale there is apprehension. It is that small fear that ignites a drive to prepare. Men of a certain vintage (call us the Swiss Army Knife generation) are capable of making the “thing” larger and slightly more hazardous than it really is. And we overthink. I bring a Jet Boil stove. And a spare canister. But what if the stove malfunctions? I bring a stick stove, just in case. But wait, what if it is raining? Perhaps some dry kindling is needed. The butane lighter is backed up with matches. And sticks can be tough to crack. Perhaps a small saw should come along. And this thinking is applied to shelter, bike parts, and consumables. Up and down this scale we go. I think of Champlain, Bridger, Carson, Shackleton. A sense of order is restored. The back-ups and the back-ups for the back-ups are unloaded. But damn it, my 6” Swedish knife always makes the final list.
The internet is seductive. Blogs are read, maps downloaded, weather data scanned, products reviewed, prices compared, stuff purchased, purchases tracked and finally received. Some purchases are even hidden. And then comes packing, repacking, buying more packs. And accessorizing the packs with pockets, straps, and clips. But order is made, weight is distributed, and all is judged ready. All the shit is now unpacked while the weeks, or months, pass and the journey commences.
Meanwhile, the maps come out. Maps are ingrained into the ritual as much as much as sleeping bags and titanium spoons. They create distractions and tell stories. In their anachronistic way, they suggest history, alert to difficulties, suggest pacing, and identify resupply. Most of all they are reassuring. A compass, some line of sight, and a few deep breathes and your location on earth is secured.
Maps are paper. They are folded, rolled, copied, cropped, marked up and laminated. GPS has its place, but not on my journey. They require batteries and some chancy alignment with satellites and cellular towers. And they might talk to you, telling you when to turn, how to pace, when you are arriving, how much you have climbed, and when to seat, stand, crap, and eat. They are the overlords of your handlebars. Things you sought to leave are right there with you. And really, knowing exactly where you are at all times speaks to a misguided mastery. If there is no lost there is no reverie. GPS is the biggest hype since Gore-Tex.
Speaking of Gore-Tex, there is none. Nor Lycra, for Pete’s sake. I don’t care to look like a bobbing bratwurst, advertising products I’ll never use. Baggy shorts, loose fitting shirts, Five-Tennie’s, wool sweater, wool beanie, wool socks, gnarly wool tights (loose fit), old school rain gear. And that’s a wrap, the body is covered. More thought goes into coffee.
March 15, 2017 Every year there was a trip. These small journeys had outsized meaning. I would gather Tim or Greg, my traveling partners/guides and we would plan a trip via bike, paddle, or foot. We hit the Grand Canyon, Verde Canyon, San Juan Canyon, San Juan Mountains, Bigelow Mountains, White Mountains, Blue Mountains, Green Mountains, Rangeley Lakes, Saranac Lakes, Great Lakes, and other rivers, trails, canyons, and long blue highways. Normally, the list of places yet to explore elongates. But time is no longer elastic. A destination unvisited conjures a sense of loss. It is an unfilled promise, the door not opened, a memory not captured. Time to cut off this hydra’s head.
The idea is to plan a small adventure each month. There will be no epics, just something rich in meaning and imagery with potential for sustaining memories. The strategy is immersion not schedule. Yes, there will be a physical push. I will be self-powered, often by myself, and in wild places. But it is more an exercise in revealed emotions and stored memories. In Friday Night Lights, Coach Taylor exhorted his team with the mantra “Full heart, clear eyes. Can’t lose”. Sounds like the right idea, my heart will be full, eyes will be clear, and body will be tired. But in the end, I will have a sense of completion. Memories of these journeys will hold dominion over the possibility of future regrets.
It is April, the planning month. Tim and I are thinking Vermont by gravel bike. An Adirondack canoe solo sounds good. I’m in Northern Idaho for Lyndsay’s 40th so mountain-biking nearby Montana is plausible. Greg and I are discussing sailing Lake Michigan. (Allison vetoed a San Juan River trip. This probably saved two lives and much aggravation for the Search and Rescue folks.) It is also a false spring. The promise of airy warmth is beaten down by days of rolling gray cold. Still, time to get moving. Best to start local, Vermont by bikepack. An easy three-day trip will shake down gear and legs while taking in some great scenery. And it was easy to pre-run the framework via car. On this small journey of exploration, Allison advanced an interest in joining up. Hell, yeah, let’s do it. Together.
Out of apprehension, love or curiosity, Allison signs on. This will be the first chapter in my Journey of No Regrets. And it feels more than right to have Allison alongside. There will be bugs. And spills, perhaps with blood. There are hills to climb and stones to sleep on. Complaining and f-bombs are likely. All good, this is her journey too.
An unexpected event and a pause….
March 1, 2017 In April of 2015 a glass slipped through my left hand, fell to the floor and broke. Consciousness paused while I searched for the broom. Once the kitchen was tidied I explored a connection between the broken glass and the awkward dance between my left fingers and the computer keyboard. This was two months after I fell off the roof, broke two ribs, received a concussion, and inflamed my left AC joint. Cause and effect, perhaps? The dropped glass, awkward typing, and other small lefty quirks would go away as my body healed itself.
Two years after dropping a glass there is a general unsteadiness in my gait, moderate dysfunction in left hand motor skills, and severe weakening in my left arm. Regardless of a full diagnosis, this is a progressive, irreversible decline. And now, many past events are re-rendered. Over the years there were frequent trips and stumbles, courtesy of a dragging left foot; many falls off my mountain bike, always to the left side. Is it possible that this condition lurked unobtrusively for years, even decades?
“…it is clear that the runway no longer reaches a far horizon.”
February 8, 2017 I love trees. “Together we will walk beneath the great trees” is tattooed on my left arm. It is from our wedding vows. The marriage is great. The arm is failing. The bad arm is also part of this story. But back to trees. It is February 2017 and I am in Big Basin Redwood Park to see some giants. I am new to the park and discover that some groves are deep within. They are found on an 11-mile circuit. This is a fair hike for someone who has a dysfunctional left leg.
Bad arm, bad leg, bad hand, bad balance. The neurologists are still reserved in their assessment. Until symptoms emerge more clearly they are calling this mess Motor Neuron Disease. ALS is “possible”. Other neuro-muscular ailments are also considered. It is likely a condition that is untreatable and incurable. One Neurologist kindly suggested that I avoid the web pages. No finite answers but good counsel.
The decline is as steady as my old Timex. I don’t see change through days, weeks, or even months. But when I roll back a year the decline is clear as day. A year ago, I would be down that trail. But today, I have a decision. Do I take the eleven-mile trek? The disquieting sense of constraint is fed by physical fallibility. The liberating freedom to plunge forward, burning the fuel of strength, resolve, and skill is fading into a gray apprehension. Now I am on the slippery slope. Optimism always overshadowed fear. But now, optimism has to be tempered with judgement. Where is the sweet spot?
I take the hike. I feel great and it should have been easy. Instead, the weather created an epic, unforeseen maze of challenges. It was the winter of drought-breaking rain. The trail, hugging steep hillsides, was washed away in places. Many a naked traverse crossed a 60-degree slope of loose stone and soil. Small plants and tufts of grass provide tenuous handholds. It’s a long way down. The saturated ground caused a number of trees to fall. (A fallen redwood is no small obstacle.) A bridge was askew. Each obstacle was a test. I was mud-covered and afraid. After seven miles I turned back, opting to deal with known problems. Ultimately, it was a challenging fourteen-mile hike. Taking stock, I feel strong but recognize a growing set of limitations. And fear lingered as though atomized behind my eyes.
For the first time, it is clear that the runway no longer reaches a far horizon. A simple walk might be a blessing in a year. A transition plan is needed. This plan could be a collection of journeys. Taken together, they will enable a great letting go, a sense that I’ve done what can be done. It is the journey to a realm of no regrets.
The context to this journey is deeply personal. It is a new consciousness nurtured by physical reduction. Mindfulness takes center stage. Guiding values are clarified: independence, compassion, doggedness, optimism, reverence. These values will sustain me. But they also have to grow for the journey beyond this journey.
I have a comfort in ignoring advice, refuting medicine, and testing limits. I am pretty adept at assessing risk, predicting problems, devising workarounds and enduring some hardship. But I do this through my own filters, experiences and values. I anticipate the reservations of others. Ultimately, I form a response, “Why the hell not?”
My last “good year” beckons. I consider my physical loves: mountain-biking, hiking, paddling, and camping. These interests interweave into mountains, rivers, forests, grasslands, lakes. There will be a series of trips. Each will be an exploration, a contemplation, and a physical stretch. Most of all, these journeys will feed the medicine of memories.